Almost tried everything and suffering 24/7

Who here has round the clock symptoms that worsen with movement? And maybe worsen with stress? Feeling brain fog, anxiety, depression, out of balance, air filled ears that pop. Who feels best laying in bed? Who prefers baths over showers (I realized I do this to avoid movement) who has had panic attacks excercising and avoids any excercising now? Who has tried most meds on the MAV treatment list with little relief? Who had these similar struggles and has found meds, ect. that have made them feel “normal” again? I take .50 kolonipin ×5 per day since diagnosed about 9 years ago. It helps, without it I would not be able to leave my bed today. I am so far from feeling normal. Since the MAV diagnosis, I thought I had migraines and anxiety and depression. I now realize that this is all still MAV related. As an attempt to treat depression and headache I have tried most of the MAV meds including, all antidepressants from the triptans to the latest. The only one left is Celexa. I have taken topamax, propanol, imerge… I have not tried the calcium channel blockers, nor Ativan. Anyone out there similar that has felt better with Celexa, Verapamil or similar, and Ativan or Valium? Desperately seeking help.

Tricyclic? I’m definitely not normal again but Amitriptyline has REALLY helped.

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I take verapamil for an irregular heart beat and headache prevention and nortriptyline for VM and the combination has helped me to stop feeling sick all day every day, to lessen spinning attacks and with brain fog. They haven’t helped my severe balance issues yet but I live in hope!

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Hey Revolving, thanks for responding. I just started Verapimil yesterday. Got 40mg instant release tabs. How much do you take and how long until you noticed the verapamil working. Was it pretty immediate? Thanks so much!

I take 40mg 3 times a day . As I have been taking it for 6 years for arrhythmia (not diagnosed with VM til 3 years ago even though I have had it for 11) I cannot remember exactly how long it took to stop headaches but I think it was fairly quickly, perhaps within a month. The addition of Nortriptyline has made a huge difference and that was immediate. I had nausea 24/7 for years but the morning after taking nortriptyline I woke up nausea free, magic. I still have a lot of other symptoms but it is a blessed relief not to feel nauseous all the time. I hope they work for you too. Just as an aside, I can not tolerate more than 10mg of Nortriptyline, anything above that and I am spinning out of control with severe stomach cramps. My neurologist has left it up to me to decide what works even though she suggested 35 mg, she understands that we all have our own helpful dose. I hope you find yours soon.

Thank you! Funny… I got 40mgs 3 times a day too. I tried Nort and Amitriptlyn, both made me worse immediately. So, went back to Cymbalta. Gosh, praying this Verapamil works. Thanks again!

You are very welcome! Good luck, I will keep everything crossed for you.

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Finally someone who understands the 24/7 part of this all. It is not “spells” or “every time I --------”. It is all day everyday. I call it “a constant state of being”. It is a nightmare . I am going to a chiropractor tonight for the first time as a last resort. I have been like this for 2 years and 1 week. I feel like I have officially lost 2 years of my life. Doctors appointments after doctors appointments. Neurologists , Mri , ct scans, ents, massages etc. Nothing has worked. Meds of all kinds. Nothing has worked.

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We hear you (if not quite as clearly as before … I joke).

I was lucky, found a med with reduced almost all the symptoms or eliminated them. However the fluctuations remained 24/7 and some days are better than others Today is a good day. Sorry to hear you haven’t been so lucky.

There was a guy on here, Beatles909 who recovered on NO MEDS within about 3 years.

There is a slight advantage not being on the meds, as it gives you more of a chance to compensate naturally, however I was so bad I had to go the medication route. His treatment was exercise. He just went mad down the gym. If you can bear it that is apparently a good approach. However, I think for at least a phase of the illness, if not for most of it your ‘lesion’ is not stable so hard to compensate, hence meds only route.

Did you have a Cone Beam CT? Did that tell them anything?

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Yes, me too! If either one of us figure out something that makes us just feel normal again… We have yo share. I keep trying. Starting with a neurologist again. I hope she can help, but I don’t know if she really gets it.